The young adult cancer patient journey
Research type
Research Study
Full title
The young adult cancer patient journey: Experiences from the Royal Marsden Hospital
IRAS ID
217898
Contact name
WTA van der Graaf
Contact email
Sponsor organisation
Institute of Cancer Research
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
What is the problem?
In response to research showing that the care needs of adolescents and young adults with cancer are poorly met, there has been a rapid expansion in the availability of dedicated services for teenagers and young adults (TYA; aged 15 to 24 years at diagnosis) in the United Kingdom. However, no age-specific care services are available for young adult cancer patients aged 25 to 39 years at cancer diagnosis, while this patient group also faces age-specific issues that can negatively impact health-related quality of life. The current patient care for young adults with cancer may be compromised by the lack of insight into the young adult cancer patient journey and probably inadequate care infrastructure (e.g. resource availability, lack of expertise).What are our aims?
To be able to develop age-specific supportive care services for young adults with cancer, this study aims to provide insight into the young adult cancer care experience, the (unmet) supportive care needs, impact of cancer on young adults’ lives, and preferences for and expectations of age-specific cancer care.How will we do this?
This study has a mixed method design. Semi-structured interviews and focus groups will be conducted with young adult cancer patients, their health care professionals and informal caregivers about the preferences and expectations of age-specific care. A survey will be administered to all alive young adult cancer patients diagnosed with cancer aged 25-39 years in the Royal Marsden Hospital in the past five years. The survey measures care experiences, supportive care needs, health-related quality of life, psychological distress, impact of cancer, illness cognitions and self-management.What can we learn?
Results of the studies described above will help to design a tool or service to support young adults with cancer (and their caregivers) in the Royal Marsden Hospital.REC name
London - Dulwich Research Ethics Committee
REC reference
17/LO/0219
Date of REC Opinion
22 Feb 2017
REC opinion
Favourable Opinion